(This entry is not in any way about food. If that means you’re not interested, you can stop reading now and I won’t be hurt at all.)

Well, we had a bit of a setback over the weekend.

Saturday, I was doing pretty well. I managed to get to the farmer’s market, stopped by Anthropologie for a little while, and then Chimp and I went to WFM for a few things. While we were there, I started leaning on the cart a little heavily, as I was starting to get worn out, but I was having about a 60-65% day, which was the usual bottom end of my functioning for the first half of this year.

If you’ve been watching the news, you have likely heard that we have been having a scorcher out here in California. That evening was the first that our air conditioner just couldn’t keep up. The temperature climbed and climbed in our apartment, until the thermometer on the thermostat was buried at the top of its range, which is 95 degrees.

We couldn’t stay there. I was starting to come apart physically, and my mental function was starting to suffer as well. We realized we needed to decamp, I called the Residence Inn down the street, and we started assembling what we’d need to get us and four cats (one visiting for a few days from a friend who’s out of town) on our way. Doing all that – in 95-degree plus air – trashed me.

I cannot imagine what the two people at the Residence Inn desk must have thought of me, leaning on their counter, my legs shaking beneath me. I know my eyes looked glazed over, my hair was unstyled, and I was covered in sweat.

Once we had the cats in the room, I collapsed on the bed, while Chimp brought the rest of our stuff up. I stayed collapsed on the bed until the next morning, when I swapped Chimp for the couch for a couple hours so that he could collapse on the bed. Then I went back to being collapsed on the bed. Being collapsed on the bed went on all day. The stress of the previous evening had been so bad that I couldn’t really stand for more than a few moments. We talked about the CSNY show, for which we had two $200 tickets right down in front.

When I had called the Save Mart Center earlier in the week, they had assured me I could be dropped off at the box office near my seat, if we got there when the house opened at 6:30. By Sunday, I knew I wouldn’t be able to sit up for the length of the show, and every moment I sat up before the show would result in one less moment of seeing the concert itself.

In the middle of the afternoon, I got a little respite and was able to take a shower and slowly, slowly put on my makeup and dry my hair. Then I crawled back into bed, hoping that the last few hours before showtime would allow me enough time to recharge so that we could go.

Around the time we needed to leave to be there when the house opened, I tried to get up and get dressed. I managed to get my jeans and shirt on, but by the time I did, the effort of moving around had sapped me so much that I told Chimp that we just couldn’t go. I called the one person who works at my office whom I knew had been interested in seeing the show to ask if he wanted my tickets. He texted me back that he was driving back from San Francisco. No dice.

I gave up. Chimp went out to WFM for some dinner for us. While he was gone, I pulled my jeans and a shirt back on, and waited, slumped on the bed. I tried to rally. Willpower is no help with this thing – sometimes you just get a tiny moment, though, and you can run with it for a little bit. When he returned with our salads, I sat and ate, as quickly as I could, realizing that it was almost time for the concert to start and hoping I could hold on to the miniscule lift I had. As we ate, he began to realize that I was dressed and obviously trying to eat fast. He sped up too. He folded the empty containers closed on the counter and said, “I’ll bring the car around back?” I nodded.

So we went to the show. Unfortunately, he didn’t know exactly where to drop me off, and I ended up walking a greater distance than I needed to and than I had anticipated. By the time I got to my seat, my legs already felt leaden and unable to move.

I walked in during “Carry On.”

I made it through the end of the first set, leaning on Chimp’s shoulder, his arm around me for support. I couldn’t jump up for the numerous ovations, one for almost every song – I couldn’t even move my arms to applaud – but at some point I rolled my head to the left and said to him, “That’s Neil Young right up there.” He smiled and nodded back. I swear that David Crosby looked right at me and smiled at me, but I thought that when I saw him in 1990, too. I think David Crosby just smiles a lot.

During the break, Chimp went to see the facilities people about a wheelchair, because it was abundantly clear I was not going to be able to walk out of there. I lowered myself across his chair, unable to sit upright at all any longer. I felt like I was in a foreign country – everyone around us was chatting and laughing and grabbing drinks from the vendors. People were standing up to stretch and calling friends in other sections on cell phones and waving to them. I was busy being grateful that the floor seats had cushions, resting my fevered cheek against one with my eyes closed.

The wheelchair arrived. The young woman pushing it asked if we wanted to go now or later. I asked how long the show was expected to go.

“11 p.m.”

11 p.m.? I knew beforehand from all the news stories I’d been reading that the show was supposed to last for more than three hours, but now I looked at my watch and really thought about what that meant. It was 9 p.m., and the break between sets had just begun. I couldn’t possibly sit up for another two hours. I looked at Chimp, trying to determine how much of the work I could depend on his arm to do. I came to the internal conclusion that it would not be enough. The young woman looked at me pointedly, and asked if I wanted to go now or if she should come back with the wheelchair. I said I didn’t want her to take it away, since it had taken more than a half-hour for it to arrive. She said, “Just tell me when you want me to come back and I will, 15 minutes, 20 minutes? Hold on…” Someone had called her. She walked down the aisle and disappeared into the crowd.

Moments later, a pleasant young man arrived and motioned to us. At that point, Chimp and I had agreed that it was time to go. I got up and got in the chair, sadly but relieved. It was more comfortable than the floor seats for sure.

This was the first time in my life I’ve ever been in a wheelchair. As I was being wheeled to the back of the arena, I got a quick look at how people standing up see or don’t see wheelchairs and just for a moment, saw other people in wheelchairs from the vantage point of a wheelchair.

There was a guy at the back of the section, in the accessible area, sitting with friends. There was another person who must have been bringing a friend’s wheelchair in. It looked like a nice one. When I was out to the lobby and sitting waiting for Chimp to arrive, I saw a woman in a chair who was using oxygen and was getting a fresh tank at that moment. She was very thin, and would have registered as alarmingly so to most people. I looked at her for a moment, remembered the additional five pounds I’d just unintentionally lost off my own already-shrunken frame, and thought, “Hey, we’re not so far apart.” I realized that I had just looked at people in wheelchairs and thought I’m with you. It felt like less of a foreign country at that moment than did the shouting, standing audience members.

The person pushing me said next time I could think about using the accessible area if I would be more comfortable. He explained where they were. I said, “Could I do that tonight?” He leaned over to the security desk behind us for a moment to consult with someone, and replied, “Yes, there’s no reason why not.” At that moment Chimp arrived with the car and I was rolled to the door. I asked him what he thought of staying and sitting in the accessible area with me. I read desperate concern on his face.

“Joc, you look really weak.”

“You’re right. Let’s go.”

He was right. He took me back to the house, which by that point on Sunday night was down to about 84 degrees, and left me there to try to rest while he went back to get the cats and all our stuff. I was still awake at 11 p.m., trying to get my overheated, exhausted self to sleep, but there was no chance that I could have sat up that long.

So I missed the whole second set. I heard a bit of the first song, but my brain was so toasted at that point that I can’t even remember what it was. Frankly, I don’t remember much of the first set either. I remember pressing my fingers slightly against Chimp-the-luxuriantly-tressed’s hand when David Crosby launched into “Almost Cut My Hair,” and I remember thinking that the Living With War songs were settling out of their dashed-out album feeling into driving, substantive pieces. The horns being in tune helped.

But I got to see some of the show. And that means I have now seen CSNY, something I’ve wanted to do since I was a teenager. And I got to see them at a time when it seemed like a lot more than nostalgia, a lot more than a baby boomer act around for the greatest hits and a few bucks.

Since Sunday – today is Wednesday – I’ve mostly been in bed. I managed to sit up in bed for a couple hours this afternoon, and then even managed to sit up in a chair for a bit this evening. The mornings are still the worst. Chimp has been giving me massages each morning to try to help with the tension and discomfort that descends a little while after I wake up.

The other good news, depending on your perspective, I suppose, is that we now have a wheelchair we’ve rented. Chimp went out and got it. We thought we might end up going to his office in the evening to escape the heat of the house, and we haven’t yet, but it’s nice to know that if we do, I won’t have to use up my tiny reserve on walking across the parking lot to his building and down the long hall to his office. I think if you’d told me a couple years ago that I would have a rental wheelchair around, it would have terrified me, but for the moment, with it seeming like a tool and a helpful option and not necessarily a permanent fact, I am fine with it.

That’s where we are, for now, at the SStB Network – all CFS news, all the time. It’s okay, really. There wouldn’t really be much to report on the food front, anyhow – it’s much too hot to cook!

Whats’s All This Then?

I’m Jocelyn. I kept this blog before becoming disabled by myalgic encephalomyelitis. That happened in December 2007. I first fell ill in May 2004. I hope someday to cook again.

I live in Washington, PA now; when I was writing this I was living in Fresno, CA.

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I blog vegetarian recipes and occasional marketing snark. Originally from Northern Virginia, I ditched out on an acting degree from NYU because the city’s food stores and greenmarkets were much more interesting.

I spent twelve years in the food industry, as a cheesemonger, tiny cog in a vast major cereal company machine and as a marketing jill-of-all-trades at a produce commodity group.